Heart problems that can cause SD in a child

[KLB32]

My 7 year old second cousin passed away in January after being briefly ill with mild flu like symptoms.  The whole family was just in shock because he really had not been that sick.

I heard from my mother today that my uncle and his wife finally got the autopsy report back and it said he died of a heart problem but my mom said they did not tell her what type of problem.

Does anyone know what type of heart problems could cause sudden death in a child?  I am worried it was one of those genetic ryhthm disorders.  I have had PVC's for a few years now and I am scared to death.

[KLB32]

Just coming back to this....actually it is my great uncle's son(my father's uncle's son).  Too hard to explain but needless to say, he had a child late in life.

His parents told my mom that he died of a condition (they did not give the name) that caused his heart cells to destroy themselves and the virus he had just sped up the process.  The ME told them he had only seen one case of it before and it so happened to be a friend of his who died on the operating table while undergoing exploratory heart surgery.  He was in his 40's.  He said it is extremely rare and not genetic.

I still worry about long QT but I think alot of that stems from the fact that my ex-boyfriend died of it and it scares me.  He had no symptoms at all and just died in his sleep.

[kitcurious]

Acute Myocarditis is a cause of sudden death in young children. The flu like symptoms seem consistent with its description..

[kitcurious]

50 percent chance of the gene(s)  passed on from your mom or dad, not your second cousin's mom or dad .

Have his parents or siblings had unusual ekgs? Do they have cousins intermarried in the family?

If I had parents or siblings (first degree relatives) or even aunts, or uncles or grandparents (second degree relatives) with it of course I would have tests (tests this poster has already had ). Second cousins are FIFTH degree relatives I believe and while they may have a higher risk of a genetic disorder than the population at large the odds are greatly reduced from "quite high" .

I wouldn't worry about it, but that's just me.

[stevie_wonder]

Well my first cousin, son of my aunt that died, has two children, both of whom have Long QT Syndrome. Both of their future children have a 50% percent chance of having LQTS. So as I stated before, it is passed on through some families at "Quite a high rate". Long QT Syndrome is the most under diagnosed heart condition of the Sudden Arrhythmia Death Syndromes. Even regular cardiologists don't have the capability of diagnosing it. I have seen many posts on this site that are contradictory of Long QT Syndrome,such as, it is easily seen on the ECG. I read this by a regular poster on here who people trust. I am just trying to pass on info that LQTS is NOT easiy seen on the ECG and many families have it. It is thought to be in the area of 1:2500 to 1:5000. It is not that rare. More children are affected by LQTS than Childhood Leukemia.

[kitcurious]

This poster was not speaking of even a first cousin.  And, as previosuly said, if one's parents or siblings or other close relatives have the problem one should obviously be concerned.  

Since it is autosomal dominant, they can certainly pass it from parent to child at a high rate . The poster was speaking of a fifth degree relative and mentions no history of a problem in anyone more closely related to him.

The poster is worried about his/her heart in general and the probability is that  such worries (starting with the PVCs) are unfounded. Maybe not, anyone could have (almost) anything I suppose.   If he/she wishes to go for genetic testing for Long QT  that is his/her right. That isn't 100% either, but it's potentially informative.

Clearly the further removed one is from a "source" ancestor the less likely one is to have a condition. If one's parents ARE the source that is not much removed. This is why I asked if his parents had any unusual readings.

[KLB32]

Thanks for the information.  I'm glad to hear your family finally got properly diagnosed.

I just looked up my holter report from two years ago and looked carefully at the doctor who read the report.  He is a board certified electrophysiologist.  The doctor I saw when all of this started at that time was just a regular cardiologist but the electro guy is the one who read the report.  I am hoping a holter would have detected whether or not I had Long QT.

My mom is going to call my cousin's parents this weekend to find out what the actual heart problem was that caused his death.  If it was not Long QT, then I'm going to stop worrying about it.  I don't want to lose any more sleep over this.

[kitcurious]

I reread your post. You said second cousin but did you mean 1st cousin once removed? Either way, 1st  cousin once removed is  cutting the common ancestry in half again.That's 1/16th similar genes. The distance is growing yet again when you are second or further removed cousins.

[kitcurious]

You shouldn't lose too much sleep anyway, except perhaps in sympathy for their loss. Genetically speaking, we don't share much DNA with a first cousin. It's not 1/4 as most people would calculate, unless you are double first cousins, it's actually only approx. 1/8.
I wouldn't risk offending the parents of the deceased child. Tread carefully, since the probability of it having anything to do with you ( and your tested healthy heart) is very low.

[stevie_wonder]

With Long QT syndrome it has a 50% chance of being passed on. So it is quite high. Often people are diagnosed after a cousin is diagnosed. But you shouldn't worry too much if you have had an EP read your holter. It still is a relatively rare disease.

[stevie_wonder]

My sister fainted alot when she was about 13-15 years old. I fainted a few times around the same ages and my niece has also fainted. My son that had the cardiac arrest had no previous symptoms. He is very athletic and was involved in competitive hockey right up to the arrest. My younger son has dizziness and my daughter has had dizziness upon waking. With Long QT Syndrome (LQTS)it can be quite hard to detect on a regular resting ECG. Most doctors and regular cardiologists cannot properly measure a QT and this is where the problem begins. Studies show less than 25% can read it properly. But an experienced Electrophysiologist (EP), a cardiologist that specializes in heart rhythms, can read an ECG beyond just the QT measurement that the machine spits out. Ours were overlooked by 2 different cardiologists and 2 doctors before I finally had them sent to a leading Long QT researcher in Italy. She confirmed that they were consistent with LQTS and gave us the names of doctors that we could see in Canada that understand LQTS. There are surprisingly few here but the US has several that are world-class LQTS researchers. Dr. Ackerman at the Mayo, Dr. Moss., Dr. Rosero. Just google their names and you will find their info. LQTS is a small world-wide community and these doctors are dedicated to helping families get diagnosed. Other changes on the ECGs, sometimes very subtle, are in the ST and T waves that are consistent with LQTS. There are many different things they look for. I have googled my brains out  and there are many free papers on LQTS that you can read. There are also specific changes on a holter monitor that they look for. Exercise testing can be helpful and sometimes they do an adrenaline challenge test to see if the adrenaline lengthens the QT measurement on the ECG. But if you believe you might have it, give one of these doctors a call and you can send them your ECGs.

[KLB32]

Actually, Long QT is something I have been fearing.  My ex-boyfriend in college died from it.  He had the inherited form and his family had to be tested after his death.  To my knowledge, he had no prior history of fainting or anything to indicate something was wrong.  He just died in his sleep at the age of 22.

Have any of your family members (besides your son) experienced fainting episodes?  To my knowledge, no one in my family has had fainting episodes.  My cousin had been briefly ill with mild flu like symptoms so there is always the possibility that a virus or bacteria invaded his heart.

How do you get tested for Long QT if EKG's don't always show it?  I have had many EKG's over the past two years.  Surely, one of them would have come up abnormal if something were wrong, wouldn't it?

I also worry about my 5 year old daughter.  I gues at this point, I just need to find out exactly what it was the killed him and whether or not it's genetic before I worry myself to the point I have an ulcer!

Oh and you're right about the PVC's.  They are not associated with increased risk in a normal heart.  That's why it is imerative to be tested to make sure your heart is normal.

[stevie_wonder]

First off, Long QT Syndrome is a relatively rare hereditary electrical heart disease. Sometimes it can be acquired from the use of certain drugs and can be corrected by stopping the medication, but in some it is genetic and will have to be treated with Beta blockers or ICDs. Secondly, I didn't mean to refer that PVCs are a symptom of Long QT Syndrome because they aren't. Sometimes, and I stress sometimes, PVCs can initiate arrhythmias in Long QT Syndrome. Basically Long QT Syndrome is the heart taking a bit longer than usual to repolarise after the natural pause of a regular heart beat. It gets it name from the measurement on the ECG between the beginning of the Q wave to the end of the T wave. Symptoms are usually none except for sometimes dizziness during exercise or syncope during exercise or stress, such as fear or fright. Usually the arryhthmia corrects itself within a few seconds and the person recovers from the faint quite quickly. But sometimes the arrythmia will be followed by VFib which can be fatal if not corrected. It can affect anyone regardless of age, but usually is diagnosed in childhood or early adulthood, and it can affect even those that are otherwise healthy. My 19 year old son suffered a cardiac arrest while running. He had never had the slightest problem with his heart before. Luckily he was revived by paramedics and now takes medication and is fine. Long QT Syndrome is most dangerous when not treated.

[sickofpvcs]

What exactly is Long Qy Syndrome? Lately my PVCs seem to have changed. I could handle just the normal PVC or two or over 1000 a day, but lately is seems that my heart is throwing a pause in there about 10 times a day. It is that pause that has me worried. I thought it was runs of PVCs, but I just went on verapamil and it seems to have quieted the PVCs. The Pauses have not gone away and each time it happens I feel like I am going to faint. Any suggestions???

[stevie_wonder]

One more comment here. I am sure I will get jumped all over mentioning this as I have read the controversy in many other threads. But PVCs are not a problem in a structurally sound heart BUT when accompanied with certain heart conditions they can bring on some trouble. So just because PVCs are common, doesn't mean that they are ALWAYS normal and nothing to worry about. PVCs aren't common symptom in Long QT Syndrome but sometimes when they are recurrent or fall on a T wave they can cause arrythmias even in people even without Long QT Syndrome.
Sorry to start something here but I get nervous when I read that people and doctors just brush off all PVCs.

[stevie_wonder]

Sorry to hear about your young cousin. Yes, I would definitely ask the doctor exactly what they think the heart condition was. Many are hereditary and since it is a blood relative you need to know. Myself and my 3 three children along with my sister and 1 of her 3 children all have Long QT Syndrome. My mother, her sister, her brother and mother all had Long QT Syndrome too we are suspecting but they all died and Long QT can only be detected in living people unless genetic testing is done. And in nearly 50% of the people with Long QT it is not always visible on a resting ECG. We are still waiting for genetic testing on our family. So my guess is if the coroner can explain the death it is more like cardiomyapathy or some other condition affecting the heart muscle itself not the electrical impulses like in Long QT Syndrome. But you should find out for some peace of mind.

[fearfactor]

I'm not sure, maybe cardiomyopathy, long QT syndrome?  When I used to live in Michigan, there was a DJ on the radio whose teen age daughter died suddenly and they determined it was from long QT after she died.  Perhaps she could ask the doctor to clarify exactly what caused his death, it would probably be good to know in case she has other children and it's a genetic problem.

[sb786]

Yes i have had that too :(  i tend to get more when i'm laying down at night to sleep. Did your pvcs suddenly start?

[KLB32]

The day I had the holter, I only felt about a 1/3 of them but there have been other days when I have felt probably close to 100 or more.  I don't think I have ever had any that have occured in a row but I have had them where they come every couple of beats and it's so scary.

[sb786]

One of my holters also caught 60 pvcs in 24 hrs. I felt every single one!! Do you ever get pvcs in a row, one after the other? I have had that a few times this week and it really frightened me. I got about 4 together :(

[ireneo]

I'm sorry to hear about your cousin.  A sudden death is always a shock but even more difficult when it's someone so young. It may not have had anything to do with rhythm however. Perhaps it was viral or an infection of some sort that found its way to the heart. Unless the family is willing to share the information, the specifics are too hard to guess. Maybe in time they'll feel more comfortable talking about it.

[KLB32]

I had an echo and wore a 24 hour holter monitor two years ago.  They were both normal.  The holter found I had 60 PVC's in a 24 hour period but my rhythm was normal.

I have probably had nearly a dozen EKG's in the past two years (3 since January) and they have all come back normal as well.

I guess I just somehow need reassurance because I know EKG's don't always detect arrythmias.

[juniorfan32]

PVCs won't kill you, they are a nuisance.  If I were you I would get checked out just to make sure, the tests are simple.   I suffer with PVCs and I am a worry wart, but after having a normal echo and stress test my mind is at ease.  You deserve peace of mind go get checked out.